'No one would believe me': Why N.S. women are speaking out about extreme pelvic pain

For years, the only answer Michelle Avery could get for the excruciating pain she experienced was that she was unlucky.

Then a surgery in June finally provided a different answer: endometriosis. It was a grim diagnosis that had her crying tears of joy.

"No one would believe me," said Avery. "I didn't have the information to back it up. All I had was my symptoms. But now I have a surgical report that says, no, this is real. This pain is real."

Avery learned she was among one in 10 women with endometriosis, a painful condition where the uterine lining grows outside the uterus and can wreak havoc on other organs.

But because Avery lives in Nova Scotia, she believes she's not getting the care she needs. There's no centre of care for chronic pelvic pain in the province like there is in Vancouver or Ottawa.

Doctors point to these multidisciplinary centres as the gold standard for dealing with the most complicated cases. There are also no specialists who treat deeply infiltrating endometriosis, although there's work underway to change that.

"There are hundreds, if not thousands, of women in the Maritimes with endometriosis that are not getting the same care as the rest of the country … and I just don't think that's fair," Avery said.

Finding support

Since her surgery in June, the pain has been even worse, she said. She believes seeing a specialized surgeon is the answer, but that could mean travelling outside the province.

The constant pain in Avery's pelvis makes it hard for her to sit down for more than a few minutes.

"I can't drive," she said. "I can't work. I can't go to the movies. I've isolated a lot. I've become the absent friend, the absent daughter, the absent aunt."

For years, she suffered in silence.

Then, a few months ago, she joined a Facebook group for Nova Scotia women with endometriosis, and met two others with remarkably similar stories — near daily pain, unable to work and frustrated with years of non-answers from doctors.  

Endometriosis takes, on average, seven to 10 years to diagnose. 

Together, Avery, Taylor Holmans and Erica Hatt-Smith have begun writing to provincial and federal ministers demanding better care and awareness for the disorder. 

Worries about the future

There is no cure for endometriosis, and treatment options range from hormones to surgery. Some women choose to get a hysterectomy​.

Holmans, a graduate of NSCC's carpentry program, said her biggest fear isn't the pain. 

"The biggest thing for me so far has been accepting the fact that I may never have the chance to have children of my own," said the 28-year-old. "That's still a daily struggle. I don't know for sure, but your chances are basically cut in half as soon as you get that diagnosis."

Hatt-Smith said a biopsy of a cyst on her cervix in 2016 showed endometriosis, but even so, she's been frustrated by her conversations with doctors.

"I've been told that you're doing it because you're bored, you're a hypochondriac — go home and take a Tylenol and forget about it," said Hatt-Smith.

Doctor travelling to Ottawa for training

Dr. Elizabeth Randle of the IWK Heath Centre said it's rare for patients to have to travel outside the province for care, but it does happen. She said most women with endometriosis get the care they need from their family doctors or gynecologists. 

"A very small subset of women who suffer from endometriosis perhaps may not have access to quite the same surgical expertise in Nova Scotia as available in other centres, that have developed that level of expertise as of right now. However, I do think that's changing," she said.

Painful periods are not supposed to be the norm.- Dr. Elizabeth Randle, IWK

Part of that change is Randle herself.

She'll be spending October in Ottawa training with an expert in deeply infiltrating endometriosis.

She hopes to bring what she's learned back to her patients, but also to create greater awareness among the medical community.

"The more that we talk about the fact that painful periods are not supposed to be the norm, the more that we raise both public awareness and awareness within the medical community regarding the diagnosis and the multiple ways that we can treat it, the better care we can get to our patients," she said.

Randle will train with Dr. Sony Singh, a specialist and outspoken advocate for endometriosis care in Canada. He wants more centres of care like the one where he works in Ottawa to be set up across the country.

He said it's time to view the condition in the same manner as cancer.

"These are patients who are disabled to the same level as a cancer patient, but there's no access for them to get all that care in one," said Singh.

'Within the scope of gynecologists'

When asked whether Nova Scotia could see more specialists or a centre of care, the Department of Health and Wellness said the management of endometriosis is already within the scope of gynecologists. The department said the condition is not "currently recognized as a sub-specialty by any Canadian credentialing body."

"It is important that we have gynecologists who are familiar with the diagnosis, treatment and management of endometriosis," the department said, adding that it's heard concerns from patients which have been shared with clinicians. 

Avery, Hatt-Smith and Holmans don't always get to meet in person but they're only a keyboard away. Sometimes, they end up messaging one another at 2 a.m. to commiserate about the pain or share ideas about treatment.

Their pain is still there but now they don't have to go through it alone. 

"The more we speak out about it, the easier it is for the next person to speak out," said Avery.

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